Want to find out if you're a bone marrow match for Alex?
In the United States?
Visit his Be the Match site for testing information or a kit by visiting http://join.BeTheMatch.org/loveforAlex
In the UK?
Visit http://www.anthonynolan.org to register
This is Alex...
Alex Sims was diagnosed with IPEX syndrome in 2016 – an extremely rare autoimmune disease that most doctors have never heard of – with fewer than 200 diagnosed cases. In addition to muscle, joint, skin and digestive problems, Alex developed Type I Diabetes at the age of 2 and has experienced countless hospitalizations due to viral infections.
Alex is in the third grade. He loves reading and really enjoys being at school with his friends. At school, Alex gets to forget about his disease and just be a kid. When he grows up, he wants to be a super hero. Iron Man is his favorite because he has protective armor and nothing can hurt him.
Most IPEX kids die within the 1st or 2nd year of their lives. Alex wasn’t diagnosed until he was 8 years old and has a different genotype of IPEX than other kids did. Doctors are hopeful that with a bone marrow transplant, he will be able to survive IPEX until a cure is found.
There are so many expenses involved with IPEX treatment – extensive hospitalizations, monthly specialist visits, weekly labs, immune suppressing medication and the bone marrow transplant itself, the costs of which could reach up to $800,000!
In addition to raising the money for COTA in honor of Team Alex, a matching donor needs to be found. There are currently 20,000 people who could benefit from a bone marrow/stem cell transplant and an estimated 3,000 people die each year while waiting for a donor. Donor screening is simple with a through-the-mail cheek swab testing kit. The ideal donor is age 18 to 44, but donors through age 60 may be used in certain cases.
In order to take care of Alex, his dad had to give up his job. COTA for Team Alex needs all of your help. Please share Alex's story on social media, volunteer to be a bone marrow donor, and donate to COTA today. Every donation can help save the lives of kids like Alex!
The Children's Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.